I have a ton to write about, but honestly, I will forget most of it due to more pressing issues.
So, there has been a problem for me at my mom's house for a while, my safest house where I spend most weekdays. But it got worse and worse during our very wet weather in May and June. There was a smell coming out of the fireplace, and I was having more and more severe reactions to it. Severe itching, pounding heart, passing out, severe insomnia, burning pain. So, I finally realized I could no longer spend the majority of my time in the family room where the fireplace is. During this same time, it seems I became sensitized to the smell of certain mold on windowsills. So, we've been trying to deal with the situation. Thankfully, my folks were able to make my bedroom safe for me again just by cleaning up the window sills with a product called Concrobium. Highly recommended for the chemically sensitive and really anyone dealing with simple, very small mold problems. We will keep it safe by making sure the blinds are open all day, every day so nothing has room to grow. The bedroom is safe for me again! But the house has not been. Just leaving the bedroom brings on tons of symptoms, and the longer I stay, the worse they get.
And that's just been one ongoing issue.
Another is that in the beginning of June, I am fairly certain I herniated or ruptured the disc below my fusion. Level C4-C5. I say fairly certain because I do not have a primary care doctor, and I am unable to receive medical care at this time. After my huge losses in March, I have not gained back any food or weight, and I am even more sensitized to my environment. Permanent losses just by going to doctor's offices. Getting a real diagnosis and treatment isn't really an option for me. It was already bulging, and we know that being below the fusion puts a lot of stress on the area. Also, the location of the pain going into my shoulder and deltoid muscle line up perfectly with a C4-5 disc injury. This injury caused level 10 pain. I do NOT say this lightly. When I was hospitalized in 2017 for status migrainosus, I labeled that level 7 pain. When I had all pain meds removed two days after my last fusion, I called that level 8 pain. So I do not say level 10 pain lightly at all. I can't remember pain this bad. The only thing that comes close is certain episodes of trigeminal neuralgia from fragrance exposures and severe burning neuropathy throughout my body as an adverse reaction to an IV medication.
So I dealt with the injury the best I could. First, I absolutely could not sleep through this pain. I was up all night moaning and crying with heart pounding for multiple nights. (And remember-my body still forgot how to sleep during the day. So there was no sleep to be had.) And just when I thought it was healing, it got re-triggered by the tiniest things, like my posture while watching a TV show being slightly off. It was terrifying. I had to take measures to avoid doing anything to strain my neck at all, trying to maintain perfect neutral posture every moment. I used ice and heat until my skin could no longer handle ice and heat due to mast cell activation of the skin around the injury. I also decided I had to quit doing my job as a transcriptionist. Anything that puts strain on the neck is a risk. Typing this right now feels risky. I also had to give up jigsaw puzzles, which required me to look down. None of that is allowed anymore. I absolutely cannot risk injuring again. I rested a lot. I could not lift anything without worsening the pain. My mom took over a lot of the load. She helped me cook and did my laundry for me for a month. After about a month, when the pain with every movement had reduced a bit, I began some of the lightest PT exercises I could come up with for core strength. I have had a lot of PT, and I know how to Google, so I was able to remember a few of the common first exercises. Gradually, the pain has improved a lot. I am wearing my rigid and soft neck collars more often and still being extremely cautious about my posture. I am truly terrified of this happening again.
Unfortunately, pain triggers mast cells to degranulate. Lack of sleep causes mast cells to degranulate. And degranulation causes a million more symptoms that make your life even more miserable, including more pain and insomnia. Ugh. So my body was in a rough state.
Then, the shaky floor I was standing on just gave out on me. My precious girl, Wilma, has been suffering from blindness, deafness, and dementia for the last two years, especially since last August, when she seemingly reacted very badly to a Heartguard pill and ended up with severe diarrhea and neurological symptoms. She has given me plenty of scares in our four years together. Really serious scares where she wouldn't eat for a week at a time and where she seemed to be unconscious and could not be roused. Apparent mini stroke episodes. A severe pain condition that wouldn't allow her to be touched. But starting last August, the decline became more pronounced. Feeding became nearly impossible. I changed her food quite a few times. I fed her by hand. She lost bladder control most of the time. But we were still plugging along.
In the last couple of months, it all got so much worse. She paced at night incessantly, often leading to repeated crying episodes and getting stuck in strange places. She became inconsolable and extremely distressed for quite a few of the overnight hours. We often stayed up until 4:00 or 5:00 AM together, me just trying to comfort her. She needed help drinking water, either by syringe or by forcing her chin into the water and holding it there because she couldn't figure out how to drink and would just lap at the air.
But finally, last week, I decided that the poor girl had had enough. We had been through a long list of supplements and medications, each of which helped for a week or two. Her meds were way more expensive and numerous than mine. And if they had helped her to feel calm at night and not cry so much of the night, I would have been happy to keep caring for her that way. But she wasn't happy anymore. She was in visible pain when she walked. She was either asleep or in extreme distress. I knew it was time. I had 5 days to say goodbye before her appointment. I savored every lucid moment she had. I love that girl more than I can express.
She was not a family pet. She was my emotional support companion. The only dog that has ever been just mine. The only dog that thought I was her mama. In my tiny world, stuck inside, there are three possible people around, two family dogs, and one Wilma--the only one that was with me all the time. Only Wilma was my constant. We both preferred it when we were in contact. There was no outside world for us. We went back and forth between the two houses together. But always together.
Grief is something I understand and I know how to do. I know how to let myself feel it in waves as it comes, and I know when it becomes too much and I need to try to think about something else. The problem is, with my crazy mast cells, that amount of hysterical crying and screaming and physical and emotional stress triggered a severe flare (as if I have ever not been in a flare--a worse flare, I guess). Blood pressure 70/40. Repeated loss of consciousness. Pain in my head and face level 9. Diarrhea and dehydration. More hair and weight loss. Grief is horrible but necessary, but the strain on my body is enormous.
I do not believe in supernatural things or an afterlife. I believe my little girl is gone. I also do not see how I could care for another dog at my current level of functioning. I can sure love our family dogs. But Wilma let me sleep until noon without making a mess or a peep. That is not a common quality in an animal! I believe she was a very unique little girl who couldn't have been a better fit with me. She was so low maintenance most of the time. She required so little daytime energy from me, which is perfect because I have so little to give most of the time. We truly belonged together.
I only know that this grief is unlike the grief I have experienced over our beloved family pets that have meant so much to me in the past. This is a whole other level for me.
Finally, we get to today. There are more issues I am brushing past because my neck is beginning to hurt, and I can't get it all down, but I need to get this out. So today, we got the much needed chimney repair done. We are all really hoping that this resolves the problem of trapped moisture and "bad air" coming into the house. It was a major repair job that was expensive and necessary. Unfortunately, in order to protect from future moisture buildup, a water-proofer was required. The smell of that stuff filled every corner of that house so fast. It was terrifying. It smelled a lot like the varnish that triggered me so badly in the apartment we had to leave. There was no question. I had to get out and fast. I put on my respirator and packed up as quickly as I could. I returned back to my condo completely alone with no one around. Another unfortunate thing is that my husband has been out of the country and will be for several more days.
I do not do well with loneliness. The reason I call her my emotional support companion is that, while she was not certified as an emotional support dog, I certainly qualify for one, and she certainly served that purpose. There was just no need to get her certified because I was allowed to house her. However, my major depressive disorder with suicidal ideation and history of self harm do qualify me. They have also made this loss even more profound. I have already spoken with a crisis line twice. I feel so lost and without purpose. (Although a part of me feels incredibly guilty to be relieved of the responsibility for someone else's well being at times.) My depressive symptoms are quite bad right now, as expected. Extreme sadness or total numbness/anhedonia. Suicidal ideation and thoughts of self harm do come back to me in times like this. They always have. It's like a default for my brain. But I am not currently at risk, so no need to sound any alarms. I am doing my best to stay afloat and let myself grieve as it comes. But my system cannot handle any more extremes. So I am alone at the condo, truly alone, and feeling a bunch of emotion that I don't know what to do with if I can't scream and cry. So I wrote it all out.
I cannot really write more or even proofread tonight because I cannot risk my neck in this position any longer.
I know things could get worse. They always can and usually do. So I am grateful for my safe space tonight. It is empty and too warm. But I am safe. I feel out of control, but I am safe. I don't know how much worse my symptoms will get tonight or when I will be able to calm down and sleep. I don't know how much more pain the night will bring. But I am doing my best. A lot of people are being there for me in the way that they can. I have had some great text and phone conversations that have helped me through the lonely nights and validated my feelings. Some nights, I just cocoon. I could barely move last night. Didn't have the energy for more than silent tears. But others, I need to let it out somehow. So there it is. Thank you for everyone who loves and cares for me, if only from afar. And thank you so much to those that are part of my tiny world. I can never thank you enough for being my whole world.
